Date: Mon, 19 Jun 1995 12:18:24 -0400
From: "Phil Bunch; B81/RL/02035; 716-477-3813; HSD-Kodak"
<pcbunch@KODAK.COM>
Subject: Basic statistics, US disabilities
Lines: 436
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REHAB Bringing Research into
BRIEF Effective Focus
Vol. XIV, No. 8 (1993) ISSN: 0732-2623
NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH
OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES
DEPARTMENT OF EDUCATION WASHINGTON, D.C. 20202
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Disability Statistics
"It is clear to most of us within the disability research community that there
is a serious need for more and better data about people with disabilities in
the United States. We need better information about the nature of disabling
conditions and their social and economic consequences, both to guide policy and
programmatic decisions as well as to enrich our understanding of disability. We
need to know more about demographic trends, the impact of impairments on
employment and the range of life functions, the ways in which people with
disabilities participate (or not) in public and private programs, and the
values and attitudes of disabled and nondisabled people about disability."
Richard L. Scotch, "The Politics of Disability Statistics." In Zola (Ed.),
Disability Studies Quarterly, Summer 1990, Vol. 10, No. 3.
How many people with disability are there in the United States?
This question is often asked by legislative offices, policy analysts,
researchers, and newspaper reporters, as they address public policy issues.
Information specialists in government or in disability statistics research and
analysis organizations have difficulty responding in a straightforward way,
because there is no simple, single answer to this question.
In many other policy areas, the measures that indicate that an individual is a
member of a particular population or group can be more clearly understood: our
age qualifies us for public school benefits, for retirement programs. Gender or
race may make us eligible for various programs and funds. The same is true for
individual or household income levels. But individuals who have worked in the
area of disability are well aware that the definition of the term, and
therefore the statistics on the size of the population of individuals with
disability, depend on various program statistics serving selected eligible
people, on information collected in surveys addressing broad social purposes,
or on interpretations of data designed to achieve particular programmatic
purposes.
As the sidebar shows, there are many different answers, and the magnitude
varies. What is important is the appropriate measure, given the specific use
for the data. Advocates may adopt larger, general numbers, like the 43 million
number used in the Americans With Disabilities Act (ADA), to emphasize the
extent of the disability policy issue. Someone doing a marketing study before
investing in a business development plan aimed at a specific limitation or
condition will need much more specific information on the population with
particular limitations or needs.
Disability statistics has been a specialty for a few researchers and public
policy analysts; with the Americans
With Disabilities Act and other disability rights legislation, the use of these
statistics and numbers is becoming more common. But sometimes the statistics
are misused and can be misleading.
This _Rehab BRIEF_ summarizes information sources for current disability
statistics and describes efforts to develop better answers to policy questions.
Disability is an important issue in public policy, requiring that we make
better use of the existing information on prevalence of disability and that we
address gaps in our knowledge.
AN ISSUE OF DEFINITIONS
The definition of disability is a crucial issue. Disability has been used to
mean everything from a minor impairment that has no or little impact on
activity to a condition that requires one to rely on others for assistance in
life's most basic functions. There is no OK accepted definition of disability.
Asking a question such as Are you disabled? could elicit many responses,
depending on the particular individual's definition of disability. To some, it
may mean using a wheelchair. To others, the inability to do a specific task or
activity. Or, it may imply a health condition. National surveys and programs
serving people with disability use specific stated definitions or terms, but
each program or survey uses definitions addressing its specific purposes. The
concept measured by a given survey or administrative data system may be
limitation of activity, limitation in function, need personal assistance,
chronic condition, or others.
Choice of the way to define disability is more than a semantic issue. The
definition determines who is included in the concept and who is not. If
entitlements, such as Social Security Disability Insurance (SSDI), are tied to
a definition of disability, there are cost-containment issues in determining
the limits of the population. On the other hand, larger numbers may be more
effective in advocacy efforts. The definition thus directly impacts the
statistical estimates of people with disability. The range of estimates varies
depending on the source of the data and the concept measured.
===========================================================
Selected Disability Statistics
- 37.3 million (20.6%) of persons over 15 have a selected physical functional
limitation--SIPP, 1984.
- 7.7 million (4%) of persons over 15 need personal assistance with one or more
activities--NHIS, 1983-1985.
- 34.2 million (14.1%) of U.S. residents have a limitation in activity--NHIS,
1979.
- 43 million Americans have at least one impairment, as specified by the NHIS,
1979.
- 14.2 million of 16 to 64 year olds are work-disabled--CPS, 1990.
- 19.7% of work-disabled people are employed full time.
===========================================================
MAJOR NATIONAL SURVEYS
Several national surveys, conducted by federal agencies, provide much of what
we know about population statistics on disability. There are many other
specialized studies that can offer additional detail on program use or on
special aspects of services; but three surveys, the National Health Interview
Survey, the Survey of Income and Program Participation, and the Current
Population Survey, provide a good basis for understanding disability
statistics.
The National Health Interview Survey (NHIS) is a nationwide sample of
households conducted by the National Center for Health Statistics (NCHS). It
queries the civilian, noninstitutionalized population of the United States on
its health. For disability purposes, it is concerned with activity limitations
and chronic conditions. A multistage probability design permits a continuous
sampling of the population. Each weekly sample is representative of the target
population and is additive with other weekly sam- ples. Sampling is done
throughout the year, thus preventing seasonal bias. The samples are grouped in
four major geographic regions: Northeast, Midwest, South, and West.
In the NHIS, disability refers to any long- or short-term reduction of a
person's activity as a result of an acute or chronic condition. Chronic
condition is a condition noticed for 3 months or more or a condition on the
National Center for Health Statistics list of chronic conditions. Limitation of
activity is a long-term reduction in a person's capacity to perform the average
kind or amount of activities associated with his or her age group. (This survey
includes a limitation in any activity including community, recreational, and
other nonmajor activity.) Restriction of activity is described as behavior
usually associated with a reduction in activity due to either short-term or
longterm conditions. In general, the major activities people are expected to be
able to perform depend on age--play for children under age 5, school attendance
for older children, working at a job or business or keeping house for
working-age adults, and caring for oneself and managing one's home without
assistance from other persons for elderly adults.
Of the total noninstitutionalized population in the United States, 34.2 million
(14.1%) were limited in activity due to a chronic health condition in 1989. Of
people limited in activity due to a chronic health condition, 10.1 million were
unable to perform their major activity, 13.2 million were limited in amount or
kind of the major activity they could perform, and 10.9 million were limited in
nonmajor activity. Limitation in activity increases with age. Of the population
aged 70 and over, 7.5 million (39%) were limited in activity. Of children under
18 years of age, 3.4 million (5.3%) were limited in activity.
Impairment is defined in the survey as a chronic or permanent defect that
results from disease, injury, or congenital malformation, whether or not the
individual is limited in work or life activities. The Americans With
Disabilities Act population size of 43 million evidently was taken from the
NHIS survey count of the total number of noninstitutionalized individuals with
impairments. The NHIS only covers the noninstitutionalized population; an
additional 1.5 to 2 million individuals, most of whom are disabled, reside in
institutions: nursing homes, mental hospitals, residential facilities, and
mental retardation facilities.
Survey of Income and Program Participation The Survey of Income and Program
Participation (SIPP) is a longitudinal survey conducted by the Bureau of the
Census. Core areas are covered at every survey period, while specific areas of
interest are done in one period. As with the NHIS, the SIPP covers the
noninstitutionalized population of residents living in the United States. The
same households are interviewed every 4 months for two and a half years. A
cycle of four interviews covering the entire sample, using the same
questionnaire, is called a wave. The third wave to the 1984 panel of the SIPP
is concerned with health and disability. The May/August 1984 third wave sample
size consisted of 19,100 households, including about 49,000 people. The SIPP
collects information based on need personal assistance as well as functional
limitation. According to 1984 SIPP survey information, 37.3 million (20.6%) of
all noninstitutionalized people aged 15 and over in the United States had a
physical functional limitation. Of those people, 13.4 million (36.29%) had a
severe functional limitation.
Current Population Survey
The Current Population Survey (CPS) is a monthly survey, conducted by the
Bureau of the Census for the Bureau of Labor Statistics, which deals mainly
with labor force data for the civilian noninstitutionalized population. The CPS
sample is selected from decennial census files covering all 50 states and the
District of Columbia. The sample is continuously updated.
Questions relating to labor force participation are asked of all members in a
household who are 14 years or older. In March, supplementary questions are
asked about income and work disability. People are classified as having a work
disability if they:
(1) have a health problem or disability that prevents them from working or
limits the kind or amount of work they can do,
(2) have a service-connected disability or ever retired or left a job for
health reasons,
(3) did not work in the survey week because of long-term physical or mental
illness or disability that prevents the performance of any kind of work,
(4) did not work at all in previous year because of illness or disability,
(5) are under 65 years of age and are covered by Medicare, or
(6) are under 65 years of age and a recipient of Supplemental Security Income
(SSI).
The 1988 CPS reported 13.4 million people with a work disability. Of these,
31.6 percent were in the labor force and 14.2 percent were unemployed.
DISABILITY STATISTICS RESOURCES
Data from these surveys are available in great detail from the agencies
conducting the surveys. For the NHIS, information is available from the
National Center for Health Statistics. The SIPP is available from the Bureau of
the Census. Programmatic data on disability are also available from agencies
such as the Rehabilitation Services Administration (the state-federal
vocational rehabilitation program), Social Security (SSI, SSDI), the Office of
Special Education and Rehabilitative Services (Special Education), the
Administration on Developmental Disabilities (ADD), and others.
To reduce the difficulty in obtaining useful information on disability
statistics, there are several recently developed information publications and
information resources that provide additional analyses and are designed to
provide the inquirer with targeted information culled from the extensive survey
data. Development of many of these resources has been supported by the
National Institute on Disability and Rehabilitation Research (NIDRR).
_Disability in the United States: A Portrait From National Data_, Susan
Thompson-Hoffman and Inez Fitzgerald Storck, editors, covers a range of issues
in disability definition, measurement, and concepts. The book includes chapters
on measures of work status, earnings, the economics of disability, and other
social policy issues informed by disability data. Appendix A to the book,
published by Springer, includes a listing of major data sources for disability
statistics.
_Data on Disability From the National Health Interview Survey 1983-1985_, by
Mitchell P. LaPlante, presents data based on analysis of the NHIS. This
publication, published by NIDRR, offers information in table form, based on
several years of the NHIS. An update, pooling more recent NHIS data, is in
preparation.
_Chartbook on Disability in the United States_, also published by NIDRR,
presents summary information from major national surveys, such as the SIPP, the
NHIS, the CPS, and others, in easy-to-read, graphic form. The Chartbook's
approach uses the most general national-level data, including estimates of the
disability population; data on demographic characteristics of people with
disability; data on diseases, injuries, and impairments causing disabilities;
disability in elderly people and in children; and work disability.
_Chartbook on Work Disability in the United States_, published in 1992, follows
the same format as the Chartbook on Disability but provides a specific focus on
work disability and on limitation on work activity in the working-age
population. Again, the material is presented in easy-to-use, graphic form.
_Digest on Disability in the United States_ provides a compilation of tables
from major sources. Originally produced by Mathematica Policy Research in 1984,
the Digest is currently being updated for NIDRR by Science Management
Corporation.
The Disability Statistics Program is a project funded by NIDRR to develop and
disseminate statistical information on disability in the United States. The
program develops, updates, and synthesizes data on major aspects of disability
in the United States, including demography; epidemiology and health status;
health care use, costs and coverage; employment and earnings; and social
services, benefits, and activity. Research results are disseminated through
reports, chartbooks, and journal articles. Disability Statistics Reports
present indepth results of statis- tical analyses of national survey and
program databases and are mailed to several thousand libraries, information
centers, and disability organizations.
The Disability Statistics Information Service provides statistical information
on a wide variety of topics concerning disability in the United States. Users
include persons with disabilities, researchers, health care providers, the
media, disability organizations, and government agencies. Topics include
demography, epidemiology, health services use, costs and coverage, employment
and earnings, and social services and bene- fits. Write for call:
Disability Statistics Program Information Service
Institute for Health and Aging, School of Nursing
University of California San Francisco
201 Filbert Street, Suite 500
San Francisco, CA 94133-3203
(415) 788-8916.
Disability Statistics State State Estimates Capability helps to meet the need
for state estimates of disability, which has become more important with the
development of technology assistance projects and with the passage of the
Americans With Disabilities Act. Employers, as well as providers of
transportation, communication, housing, and education, must plan to accommodate
individuals with disability and would benefit from better knowledge of local
and state disability data. The 1990 census provides direct estimates for
states, counties, and places. However, few local surveys exist. To address
this issue, a special statistical study was undertaken to develop a statistical
approach to local-area estimating. This research, also supported by NIDRR,
funded as part of the Disability Statistics Program, and conducted with
assistance and cooperation from the National Center for Health Statistics, has
resulted in the development of statistical estimates of disability. In one
example of the use of this statistical estimation service, the state vocational
rehabilitation agency in Oregon has been able to develop detail on disability
prevalence in its state population in far greater detail than would otherwise
be available.
This analytic capability, which is of use to state agencies and service
planners, as well as to companies interested in developing products for the
disability market, is available on a consulting basis through InfoUse in
California:
InfoUse: Disability Statistics Estimates
2560 - 9th Street, # 216
Berkeley, CA 94704
(510) 549-6520
FUTURE DIRECTIONS IN DISABILITY STATISTICS
While there is a good deal of current effort to make disability information
more available, there are shortcomings of current surveys. Several major
efforts aimed at improving the situation are important.
The _Disability Studies Quarterly_, published by Brandeis University and edited
by Irving Zola, dedicated its Summer 1990 issue to disability demographics.
This issue gives an overview of the actors and the issues in the production and
use of disability statistics. The major theme developed is the politics of
disability statistics and the importance of developing the concept and
translating it for public awareness and media use. Much of the discussion on
demographics centers on the importance of definitions and the difficulty in
arriving at a common ground, given underlying differences in political intent
and uses of disability demographics in policy debate.
An Interagency Committee on Disability Statistics has been implemented at the
federal level to coordinate ideas and funds for disability-related issues and
to work toward improved statistics in the national surveys. This committee
considers issues such as the addition of more specific disability questions to
national surveys and the coordination of agency efforts. Several expanded
efforts are already underway. The 1990 SIPP and the 1991 NHIS have expanded
their information on functional limitations. The National Center for Health
Statistics plans a national disability survey in the next few years.
The National Academy of Sciences Committee on National Statistics has been
examining further direction in disability statistics. The committee held a
workshop in 1990 and has published the results of that workshop in Disability
Statistics: An Assessment. The committee identified a number of issues to be
resolved:
- Concepts, definitions, and measurement problems. As discussed in this
_BRIEF_, inconsistency in definitions, both among major United States surveys
and internationally, causes confusion. Without clarity of definition,
interpretation of measures for policy purposes is difficult.
- Coordination. Better coordination among data producers, more communication
among producers and users, and more communication among users would lead to a
better system.
- Data needs for policy analysis. Gaps here include availability of data at
local or state levels, a single disability indicator or rate (like, for
instance, the infant mortality rate), and information on service needs and
costs and barriers to receipt of services. Longitudinal studies are also
lacking.
Other issues included data linkages and data matching, data analysis, sampling,
and international comparability. Underlying all of this discussion is the
continuing argument over which agency should pay for collection of information,
since many agencies are currently involved in pieces of the puzzle.
The committee recommended the creation of a panel to study disability
statistics and to continue the effort to expand this field to a new level.
The development of better statistical information will obviously be a long-term
project, involving a number of players. Possibly because statistics is
generally regarded as a "dry" topic, or a topic requiring an affinity for
mathematics or computer skills, most of the current development effort is
being carried on by statistics experts and data producers. With the broader
interest in estimating the size of the disability population that comes with
the ADA and its regulations, there may be the opportunity for additional
investment in advances in the development and informed use of disability
statistics.
SOURCES
Adams, P.F., & Benson, V. (1990). _Current estimates from the National Health
Interview Survey, 1989_. Vital Health Stat., 10 (176). National Center for
Health Statistics.
Kraus L.E., & Stoddard S. (1991). _Chartbook on work disability in the United
States_. (An InfoUse Report). Washington, DC: National Institute on Disability
and Rehabilitation Research.
Kraus, L.E., Stoddard, S. (1989). _Chartbook on disability in the United
States_. (An InfoUse Report). Washington, DC: National Institute on Disability
and Rehabilitation Research.
LaPlante, M.P. (1988). _Data on disability from the National Health Interview
Survey, 1983-1985_. (An InfoUse Report). Washington, DC: National Institute on
Disability and Rehabilitation Research.
Levine, D.B., Zitter, M., & Ingram, L. (Eds). (1990). _Disability statistics:
An assessment_. Committee on National Statistics, Na- tional Academy Press.
Mathematica Policy Research, Inc. (1984, June). _Digest of data on persons with
disabilities_. Washington, DC: Author.
Thompson-Hoffman, S., h Storck, I.F., (Eds). (1991). _Disability in the United
States: A portrait from national data_. New York: Springer Publishing Company.
Zola, I.K. (Ed). (1990, Summer). _Disability Studies Quarterly_, 10 (3). (Issue
dedicated to disability demographics).
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